Saturday, September 26, 2009

I'm Home

I am very glad to be home.  I received very good care at HCI, but honestly I was very happy to leave to come home.  I'll still deal with some of the side-effects for a couple more days.  I should be back to feeling normal mid-week next week.

My heartfelt thanks goes out to all who helped with the kids, and to those who's thoughts and prayers were extended on our behalf.

Thursday, September 24, 2009

Week 0.75

We are approaching the end of week 1. Since treatment started Monday, I have received 10 doses.  I talked with the doctor this morning and he thinks we'll do one more dose this afternoon, then another dose early tomorrow morning for a total of 12 doses.  I'm hoping to be out of here sometime Friday afternoon, but wouldn't be surprised to stay here til Saturday.

Overall the drug has had some side effects.  I have retained a lot of water.  Gained in water weight so far around 15 lbs.  Most of which appears to be in my face which is very puffy at the moment.  I've also got some fluid in the lungs that has given me a bit of a cough.  They tell me when I leave that they will give me medication to help drop the water back off.  My appetite has been decent up until last night when I had about three bites of dinner, and breakfast this morning was two small cups of cranberry juice.  So food has lost its appeal 

No big surprise, but the schedule has been modified slightly.  Instead of having one week off between cycles they are now going to give me two.  So I will now spend Weeks 2 and 3 at home and check back in at HCI for week 4.  That will also be the case for the second course, I will still start on Week 8 but will have two weeks off and will check back in for Week 11.  As always this schedule is subject to change at any time.

Sunday, September 20, 2009

Week 1

So I have officially checked into Huntsman Cancer Institute (HCI) for treatment.  Allison came up with me tonight and we arrived a little after 6 pm.  Allison helped to get me situated and got the orientation and then went home to put the kids down for the night.  I am very grateful to be able to receive treatment here in SLC so that Allison can still be with the kids.   

Here in the near future I will be getting an IV for fluids and antibiotics tonight before the treatment starts tomorrow morning.  I will likely spend most of the week here in the hospital for the administration of the treatment of the high dose IL2.  We have been told that I'll likely be discharged Friday or Saturday of this week, depending on how things go.  This then becomes Week 1.

Week 2 will be spent home again recovering and doing whatever I feel well enough to do. 

Week 3 will be another round of high dose IL2 at HCI - checking in again on Sunday night and then hopefully out Friday or Saturday of that week. 

I will then get a couple of weeks off.  The current game plan (although experience tells me it is likely to change multiple times between now and then) is to do new scans at the end of Week 7.  Depending on the results of those scans we will determine what the next step will be.  For now we think it will be another course of two cycles of high dose IL2 starting with Week 8 at HCI, Week 9 at home, and Week 10 at HCI.  Beyond that, what comes next is anybody's guess.

We are excited to be starting treatments after a bit of a roller coaster getting us to this point.  We're grateful to be finally taking steps in the right direction. 

We are extremely grateful to the many that have reached out in kindness to our family.  And thanks to the thoughts and prayers from everybody we will make it through this. 

Wednesday, September 9, 2009

Game Plan (for now)

I am starting to think that the most difficult part of this whole thing is getting everything scheduled.  I'm sure I'll feel differently once the treatment has started in earnest.  But for now, we have had some challenges and frustrations in getting to the start line. 

We have been bouncing phone calls and emails back and forth between Huntsman Cancer Institute (HCI) and MD Anderson Cancer Center (MDACC) for a couple of days now in an attempt to determine when we can finally get this going.  And although I've learned in the last couple of days, this is subject to change at a moment's notice, it appears that we have a plan in place.

We are planning on checking into the ICU at HCI on Sunday September 20th where I will receive the high dose IL2.  I will be there for most of the week, likely being released on Friday or Saturday.  This will become week 1.  Week 2 will be off and at home.  Week 3 will be back into the ICU at HCI for another round of IL2.  After that we'll reevaluate and  determine how to proceed. 

Thanks again to all of your great support, your thoughts and prayers are very appreciated.  We know many of you have challenges you're facing right now and our thoughts and prayers go out to you. 

Saturday, September 5, 2009

Roller Coaster Ride

Sooner or later this roller coaster is going to stop, but as of right now we don't know where or when. 

We are trying to get in to receive the high dose IL2 drug treatment.  This treatment  requires that I spend a week in the ICU to receive the dosages.  Both MD Anderson (MDACC) and Huntsman Cancer (HCI) can provide the treatment, but there are some variables we are trying to determine before resolve where and when we start the treatment.  Right now we are trying to find out if we can start the treatment at MDACC possibly Wednesday the 9th of September or HCI on the 13th of September.  We won't know if we can get into MDACC until Tuesday when everybody returns from the Labor Day weekend.  And even the HCI 13th date has some maybes that we won't be able to resolve until later next week.  So based on our track record this will change three more times between now and when we actually start treatment, but I think we are slowly closing in.